Ethical Issues

Consumers and family members strongly believe in the importance of research. NAMI members have benefited from research advances to date, and, it is central to our hope for improved treatment and cures for such disabling and chronic brain disorders as schizophrenia and bipolar illness.

But our strong support for research hinges upon the appropriate care of consumers who volunteer as research subjects. Consumers who are considering participation in research, along with their care-giving family members, must be fully aware of what the protocols involve; what risks they will face; what options they have; and who they should contact with questions or issues as they arise. When vulnerable, because of their brain disorder, even further protections are required. And they must always, always be treated with dignity.

NAMI consumers, as shown in our survey, want to contribute to research, but they want to understand the risks, they have preferences about the kinds of research protocols they are willing to participate in, and they wanted to be treated with respect. We cannot let the NAMI consumers, who strongly support research and often altruistically contribute to it as volunteers, down. We must afford them the best protections possible. NAMI has worked diligently through much of the 1990s to safeguard consumers with mental disorders who volunteer for research. We constructed a policy on research ethics, which we have used to inform our advocacy at NIMH and with other research sponsors. We worked, successfully to have our policies included in the recommendations from the presidential National Bioethics Advisory Commission (NBAC). We have been translating our policy into practice with the development of our IRB training program and informed consent video for consumers.

Now that the Decade of the Brain has ended and we enter a new Millennium, we should redouble our support of brain disorder research. But we must also continue to examine and improve the way research is conducted, so that research volunteers are treated with honor and protected from inappropriate harm. Research and ethics must go hand in hand. [Note: from Laurie Flynn's "Research Must Go Hand-In-Hand" in The Decade of the Brain vol. IX-3.]